Sign Up for Our Digestive Health Newsletter

Thanks for signing up!

Up to 75 percent of people with Crohn’s disease will require surgery at some point. For some, surgery is an opportunity for quality of life improvement — but for others — it's a medical necessity.

What Is an Ostomy?

When damage to the gastrointestinal (GI) tract makes it necessary to reroute bodily waste, a surgeon creates an ostomy — a surgical passageway in the abdominal wall through which waste leaves the body. The extent of the intestinal damage determines whether your ostomy is temporary or permanent, and the area of damage determines the type of ostomy needed.

There are two main types of ostomy for Crohn’s, explains Debra A. Vachon, MD, surgical director of the Center for Inflammatory Bowel and Colorectal Diseases at Mercy Medical Center in Baltimore. “An ileostomy involves a surgical opening created by bringing a portion of the small intestine or ileum out to the surface of the skin, allowing more liquid waste to pass into an external pouch," she said. "A colostomy is created by an opening in the colon. The output tends to be more solid and is emptied less often."

Dr. Vachon acknowledges that the possibility of needing an ostomy can be frightening. “I explain that the ostomy does not hurt — there is no pain with the passage of stool," she said, and people "don’t need to radically change their lives." In fact, she tells of a friend who, in the 1970s "when ostomy equipment wasn’t nearly as advanced as it is today," would swim as well as coach and play football despite an ostomy. "So you can do most any activity, eat most foods, wear regular clothes, have sex, and so forth," Vachon said.

Self-Care Tips

Hospital staff members will work with you before and after your surgery to make sure you know what to expect and how to care for your ostomy, explained Harriet E. Pilert, MS, RN, COCN, an ostomy nurse at Mercy Medical Center. “The actual care of an ostomy is very simple and should not be considered a burden.”

An ostomy pouch is used to collect waste from your stoma, the actual opening. Whether a pouch is attached throughout the day depends on the type of ostomy you have. Some people with colostomies are able to irrigate their stomas with a special irrigation system and then use a stoma cap to cover and protect the opening until the next irrigation. Others wear an ostomy bag that collects waste throughout the course of a day and empty it as needed or according to a set schedule.

The ostomy pouch is attached to a wafer (also known as a skin barrier, designed to protect the surrounding skin) and is then fitted over the stoma. Open-ended pouches are drainable and remain attached to your body while emptying. Pouches with closed ends are most often used during the irrigation process and are usually disposed of after each use. The various styles of supplies now available can make caring for your ostomy as easy as a regular trip to the bathroom.

Enjoying Everyday Activities

People with ostomies are only limited by what they perceive they can’t do, said Pilert. An ostomy does not change the way you bathe, dress, or participate in life. There may be limitations for the first few weeks after surgery on such things as how much you can pick up or whether you can drive, similar to the precautions taken after any surgery. But, in time, you'll be able to resume all normal activities, including playing sports, exercising, and traveling. “We strongly stress that having an ostomy does not limit your lifestyle,” she added.

Finding the Right Diet

Most people who have an ostomy because of Crohn’s will have some dietary restrictions, said Pilert. If you have an ileostomy, you'll need to be especially careful with high-fiber foods that are not easily digested. Eating foods like celery, nuts, coconut, beans, or anything with a hull like corn on the cob, popcorn, cabbage, raw vegetables, and foods with skins could result in a blockage, she warned. She suggested drinking at least 8 glasses of fluid each day to help prevent this problem.

Karen Langston, CNCP, LE, a certified holistic nutritionist specializing in Crohn’s disease and board director for the National Association of Nutrition Professionals, stressed the importance of staying on top of nutrient intake. “Vitamins and minerals are absorbed in different parts of your intestinal tract," she said. "If you are missing a part or all of it, I highly recommend working with a qualified health care practitioner or physician that specializes in nutrition and nutrients.” If you are not able to get the nutrients your body needs by eating the proper foods, Langston recommended three methods for getting nutrients into your bloodstream where they can be used by your body: sublingual (vitamins placed under your tongue), liquid vitamins, or intravenous administration of nutrients.

Langston spoke from personal experience when she said to beware of foods that will cause gas. She has Crohn’s disease and had a temporary colostomy for 11 months. Veggies such as asparagus, broccoli, Brussels sprouts, cauliflower, and cabbage are prone to causing gas. “It can be loud and embarrassing, not to mention if too much gas builds up, you will have to find a place to go to release it!” Spicy foods and carbonated beverages can also be gas-producing culprits.

Overcoming Body Image Issues

You have the right to feel however you feel after your ostomy surgery. You don’t have to put on a happy face and pretend everything is fine if it doesn’t really feel that way. Natascha M. Santos, PsyD, a psychologist and adjunct assistant professor at Suffolk County Community College and SUNY Old Westbury in New York, said it's important to allow yourself to feel the negative emotions similar to grief that can occur when facing this type of loss or change. “Finding a good therapist that specializes in body image is very important, as are support groups, so you can identify with others and feel less isolated," Santos said.

Allow yourself time to process the change to your body and then try to remember that many people have been through this same experience. “Reach out to the United Ostomy Associations of America,” an organization that offers a wealth of resources, including lists of support groups, suggested Langston. “Reach out on social media platforms such as Twitter and Facebook, where there are others who will support you and answer any questions you may have. On Twitter, use the hashtag #ostomy, and you will find tons of people around the world you can connect with.”

People dealing with chronic or terminal illnesses or repeat losses often fall victim to the “why me” cycle, said Santos. This can lead to depression. Instead of focusing on things you cannot control, focus your energy on steps you can take to improve your quality of life. “It is important to recognize what is in your control and be proactive in managing your illness and your stress," she said. "The focus should be on moving forward and ‘what can I do from this point on.’ ”

To bring herself out of the depression she felt after her colostomy, Langston had to stop looking at life from a victim's point of view. “I began writing messages of affirmation on my bathroom mirrors: ‘I love you,’ ‘You are beautiful,’ ‘There is nothing you can’t do,’ and others,” she said. The positive affirmations helped her regain the confidence she needed to begin living life again. “I also had to reach out to my new stoma and accept it and love it and name her," she said. "I named her Lovely Rosey. I learned that I had to accept who I was with all my new parts in order to accept all of me. That was the key to be able to move forward.”

This site complies with the HONcode standard for trustworthy health information: verify here.

Advertising Notice

This Site and third parties who place advertisements on this Site may collect and use information about
your visits to this Site and other websites in order to provide advertisements about goods and services of
interest to you. If you would like to obtain more information about these advertising practices and to make
choices about online behavioral advertising, please click here.